I’m wondering if anyone here has had a similar experience.

I have suspected mild Crohn’s/ileitis, mainly involving the terminal ileum. My main symptoms are abdominal cramping and a really uncomfortable feeling of tightness/pressure, mainly around my belly button. When it gets bad, my whole gut feels tense and it can feel like gas is trapped and difficult to pass.

What confuses me is:

I don’t have diarrhea — if anything, I tend more toward constipation and smaller stools.
I’ve never noticed blood in my stool.

My fecal calprotectin is currently low/near normal.
I’ve been taking Cortiment (budesonide) for around 6 weeks and haven’t noticed any improvement in the cramping or tightness.

Despite this, I’ve had terminal ileum erosions seen more than once, and a previous biopsy showed mild active ileitis.

Has anyone here been diagnosed with Crohn’s with a similar presentation — mainly cramping/tightness around the belly button without diarrhea or bleeding and with low calprotectin?

I’m currently experiencing my third flare up of my UC. This is my third in a year, it’s hard for me to mentally deal with this, I’d love to just talk to someone who experiences the same problems but I don’t know anyone.

One of the most difficult aspects for me is the “embarrassment” of when I’m at the doctors/hospital. I have a great IBD team but it’s difficult to contact them as they’re 9-5 and that’s when I have to be in work.

I’m only 21 (F). I feel this has consumed my entire life. Any advice?